Note from Alice: Stop Asking Me about Diarrhea at the Dinner Table

Like most of you reading this, I have celiac disease, a serious genetic autoimmune disease. It means that we can’t eat gluten - ever. Naturally, our dietary needs come up immediately in a restaurant scenario. It’s nearly impossible to order a gluten-free meal and ask a ton of questions about ingredients and preparation practices without anyone noticing.

My family and friends are used to me explaining my needs by now. But, when I dine with new people who don’t know much about celiac disease, they are naturally curious about why I am eating gluten-free. The conversation always turns to the inevitable question: What happens if you eat gluten?

Like many of you, I am hit with a raft of symptoms that yes, includes diarrhea. When the peppering of questions starts, I find myself wishing I were invisible. My disease becomes the topic of discussion and I am the center of attention - and not the good kind of attention. The kind of attention that makes you feel like a specimen, looked over and examined by curious minds.

It’s not that I mind talking about celiac disease. I am an advocate, after all. There are certain times though, when I don’t want to be defined by my disease, like when I’m meeting new people and in a public place like a restaurant. When people do ask me that inevitable question, I get the sense that they know I have something (gross) to say.

My message to them? Please stop asking me about my diarrhea and other painful symptoms. Ask me instead about the reason you’ve never heard of celiac disease or met someone with it (it’s underdiagnosed, so you probably have). Ask me why the needs of celiac disease patients are minimized (“it’s just a fad”). Ask about how to properly prepare foods for someone with celiac disease (it’s more difficult than you think). Ask how celiac disease impacts my daily life.

Until the questions I receive about my celiac disease at the dinner table change, I’m just going to give the answers that no one is asking about. Celiac disease means that my body fights itself and refuses to absorb nutrients. It means that when I eat gluten, I have debilitating migraines that prevent me from doing much of anything. It means that my skin burns and my joints ache for days.

When people ask for the gory details of how gluten affects our bodies, they ignore and contribute to the invisibility of celiac disease. The symptoms and damage done to our bodies from eating gluten isn’t always obvious from the outside. We don’t always “look sick,” and our dietary needs are the subject of the latest fad diet, making people think we’re trying to lose weight or latch on to the hottest celebrity diet. We’re often viewed as fakers or picky eaters. It’s in these situations that we not only want to be invisible, but when we are invisible. People don’t see us. Just our (medically-necessary) diet.

Living with an invisible illness extends well beyond the restaurant. It takes most people with celiac disease six to 10 years to get an accurate diagnosis. By the time we get our prescription of a gluten-free diet, we’ve often been brushed off, told that our symptoms are in our heads, or that we “look fine.” That wears on a person after a while.

Eventually, we can get tired of the questioning, tired of always having to fight for others to understand us. Sometimes, it’s easier to make ourselves invisible. Some of us stop going to parties. Many haven’t been to a restaurant in years. Some drop out of college. Others will take risks by eating something questionable and paying the consequences later instead of drawing unwanted attention to themselves and their disease. It’s even worse when the decision to remain unseen isn’t ours. It’s not uncommon for people in the community to stop being invited to events altogether to avoid accommodating their diet.

May was Celiac Awareness Month. Throughout the month, we asked that others take a moment to look beyond the surface of our invisible illness. Because of your sharing, commenting and hashtag-ing, we were able to reach thousands of people to help them see past the gluten-free diet and recognize the people that are living with a serious genetic autoimmune disease. Instead of focusing on the symptoms, you helped your social networks take #60ForCeliac and watch a one minute video to see what it’s like to actually walk in our shoes. You helped them to see what’s happening beneath the surface, not what’s happening in the bathroom.

Thank you all for making Celiac Awareness Month a success. We couldn't have reached so many people without you.

Cooking with Oonagh

Serve this hearty German potato salad to Dad for Father's Day (and add even more bacon if you want to make him extra happy). I like this version, but your taste for sugar and vinegar could be different to mine, so experiment. I like the crunch of raw celery, or you can also try adding raw apple just before serving for a similar crunch. I use a grain mustard and fresh herbs for visual appearance. Growing up, I always had homemade potato salad (didn't we all?). It had cooked, warm potatoes with fresh oil and vinaigrette poured over them so that the warm potatoes soaked up the dressing quicker. Read more.

Don't worry about length of recipe. It's easy, and I try to give as much advice as possible to help you. I always try and simplify my recipes, as none of us have time for involved methods and lots of dirty dishes. I saw one recipe that cooked the carrot and puréed it, but that just didn't work for me. I also tried cooking a shredded carrot in the microwave, but it didn't make a difference, took more time and dirtied another dish. I prefer shreds of raw carrot because they give texture and do cook in enough time. I prefer the finished cake served at room temperature so the filling softens and the whole jelly roll melts in your mouth. Read more.

About Chef Oonagh Williams

Chef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. She spends her time speaking and writing nationally on food for gluten-free and other specialty diets. Recently, she advised three celebrity chefs in Boston.

For Father’s Day, buy her Delicious Gluten Free Cooking e-book, with over 200 pages and full-color photos for only $20. Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her New Hampshire ABC appearances and products she's found and tasted. Connect with her on Skype for help in following a restricted diet. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens. Chef Oonagh is teaching a three-week gluten-free cooking class at Nashua Community College, NH in June. It includes fun and affordable gluten-free hands-on cooking and demonstrations. Read Chef Oonagh’s 6-page article on eating gluten-free during her trip to South Africa in the current issue of New England Celiac magazine.

Q&A: Patient Participation in Research

Patient participation in research is vital, and patients that are reluctant or unable to participate in clinical trials can help advance celiac disease research in several other ways. Less intensive participation, including surveys, focus groups and Beyond Celiac social media discussions, all provide essential information to researchers. This month, we sit down with two experts to talk about patient involvement in celiac disease research.

Daniel Leffler, MD, MS, is Director of Clinical Research at The Celiac Center at BIDMC and Director of Quality Assurance, Division of Gastroenterology at Beth Israel Deaconess Medical Center and Beth Israel Scientific/Medical Advisory Council Member.

Kristin Voorhees, MA in Health Communications, is the Director of Healthcare Initiatives at Beyond Celiac. She has been working with Beyond Celiac since 2010 and is diagnosed with celiac disease.

In what area is most celiac disease research currently being done?

Leffler: Research is being done across nearly all areas of celiac disease, from basic science into the immune reaction to coping and adaptation of family members. It would be hard to pick which area has the "most" research at any one time.

What topics in celiac disease need more research and exploration?

Leffler: I believe that, while we have learned a great deal in the past few decades, we still have much to learn across all of celiac disease, from the genetics to the psychological. In my opinion, one of the most important areas that urgently needs evaluation is the costs and benefits of celiac disease screening programs.

I don’t want to participate in clinical trials that involve testing drug therapies. Are there other ways I can contribute to research outside of this? If so, how do I find out about them?

Voorhees: Yes, there are many other types of research outside of drug trials. These can include surveys taken online or at your doctor's office, focus groups, one-on-one interviews with researchers or studies that take place in the doctor's office (also known as clinical research). Letting your doctor or dietitian know that you're interested in research is a great place to start. You can also stay informed by connecting with the patient advocacy organizations, like Beyond Celiac, on their websites and social media. Beyond Celiac began the Research Opt-In as part of our commitment to advancing research. The Research Opt-In updates patients and family members about ways to participate in research. We keep up-to-date on the latest in celiac disease research so you can have opportunities delivered automatically to your inbox. It is just one of the many ways Beyond Celiac works to advance celiac disease research. You can sign up for the Opt-In here.

What makes someone a good candidate for participation in research? What are the potential benefits and risks of participating?

Voorhees: Each research study and clinical trial has its own inclusion criteria, which are the characteristics that a person must have in order to participate in a study. These are specific to each study, but often include things like a person's age, length of time on the gluten-free diet and whether the person has ongoing symptoms or their celiac disease is well-controlled. The benefits and risks will vary by study or trial, but overall, I think it's important that patients remember that one of the biggest benefits is playing a direct role in helping doctors and scientists better understand celiac disease and advance its research.

I see requests to answer online surveys several times a year. Does taking a survey actually help with scientific research? What happens with the information gathered in surveys?

Voorhees: Yes, it does! Researchers will often use surveys to help guide their research strategies and to learn more about patients and the challenges or needs they might have. Surveys can also help doctors or dietitians better understand how well a patient is handling their celiac disease diagnosis or maintaining their gluten-free diet. This can help to improve the ways clinicians are managing and treating their patients’ diagnoses and also determine new topics that require further research.

Why do I have to keep sharing some of the same information in surveys, focus groups and conversations with researchers? Do researchers share data they gather with each other?

Leffler: Hopefully you are not getting the exact same questions over and over again. We certainly share our results with other groups, but regulations usually prevent us from sharing individual, patient-level data. You may see different groups doing similar research. This is all part of the scientific process. To make sure findings are real and robust, we like to see similar studies with similar results in different populations.

If I participate in a study, will I be provided with the results of the study and of my contribution? If not, how can I find out the results?

Leffler: This depends a little on the type of study. You should always be able to find out the results of the overall study from either the investigators directly or by looking on www.clinicaltrials.gov. We are always happy when people reach out to us after a study to hear about the results. At the same time, it can often take months or longer to interpret the data, and in some trials of therapies, we may never know who got active treatment and who got placebo, so individual data may not be available.

What are examples of research that have focused on things other than developing new treatments and already had an impact on the celiac disease community?

Leffler: One area that has been very helpful is the study of non-responsive celiac disease. These studies have given doctors a much better sense of what is going on when patients with celiac disease don't feel better and have guided diagnostic and treatment algorithms. (You can access Dr. Leffler’s research on non-responsive celiac disease here.)

How do I stay up-to-date on the most recent developments in celiac disease research?

Voorhees: There is a great deal of research currently being conducted on celiac disease, but it can be difficult locating all of this exciting news. Beyond Celiac gathers the most important news from the world of celiac disease research and provides regular updates through our Research Opt-In. You can stay up-to-date with new celiac disease research by signing up here.

Is There Gluten in Your Thyroid Medication?

One of the most challenging aspects of living with celiac disease can be determining if your medications contain gluten and, if so, how much. Celiac disease often goes hand-in-hand with thyroid disease, so Beyond Celiac wants to share information about a common medication for thyroid disease: Cytomel, manufactured by Pfizer.

In an article on her website, Dr. Izabella Wentz, Pharm D, brought up the concern of Cytomel containing gluten after a reader shared news that the medication is not guaranteed to be gluten-free. We decided to do some research of our own and gave Pfizer a call to get a better understanding of the issue.

We were pleasantly surprised to find that the Pfizer representative from the medical information department knew about celiac disease and understood why gluten in a medication would be a concern. We were informed that Pfizer does use starch in Cytomel and that any given lot may or may not be gluten-free. Pfizer uses different starches, including wheat, to bind the product. Some lots may include wheat while others will not. At this time, there is no testing of the final Cytomel product. Therefore, it is unclear if this product is safe for people with celiac disease.

So what should you do if you are taking Cytomel?

If you have concerns about continuing this medication, talk to your prescribing doctor about it. Do not stop taking your medication without first talking to your doctor about other options.

Tell Pfizer that you have a concern. The representative we spoke with asked if we would like to make a formal request to Pfizer to address this issue related to Cytomel containing gluten. We opted to share our concern and encourage you to do the same if you are worried about Cytomel containing gluten or the contents of the product not being listed on the label. Dr. Wentz’s original article gave a great outline of how to go about calling Pfizer and what to say.

This is a perfect example of why it’s important to have regulations surrounding labeling ingredients in medications.

You can take action! In 2015, Ohio Congressman Tim Ryan and New York Congresswoman Nita Lowey reintroduced the Gluten in Medicine Disclosure Act, which would require drug manufacturers to list the ingredients on a product label. You can monitor this bill’s progress and make your voice heard by calling Congress. GovTrack.us has all the information you need to support this bill.

Allergic Living Sneak Peek: Celiac Disease in Children or Teens: The Sneaky Signs to Watch Out For

By Lisa Fitterman

As a mouse magically turned into a coachman, Edyth Moldow was supposed to look small in her dance school’s production of the ballet Cinderella. But her mom’s breath caught when she realized just how tiny and pale her daughter looked compared to the other children leaping and twirling across the stage.

Over an 18-month period, Shindler Moldow and her husband, Greg Moldow knew that their daughter, then nine years old, had fallen behind her peers in height and weight. But the couple from Denver simply figured their daughter was destined to be petite. Sure, Edyth fretted that she was smaller than all her friends, but she had no health problems save for the rare headache or sore tummy. Those didn’t seem out of the ordinary. Even the family’s pediatrician, who saw the girl once a year for an annual checkup, said she was fine, if a little thin.

Now, sitting in the darkened theater, Shindler Moldow knew in her gut that they had all been wrong. Read more.

Driving Awareness through Personal Stories

There is power behind a personal story. Sure, facts and figures can be helpful when explaining celiac disease, but it is the personal experience that draws people in. When we open up and share our own experiences, we put celiac disease in the context of real life. It’s no longer something people have heard about in passing, but a real thing impacting a real person.

Last month, Beyond Celiac CEO Alice Bast told her own diagnosis story through the WebMD Chronic Conditions Blog. Check it out through the link below and be sure to share your story with someone who doesn’t know much about celiac disease. You might be surprised by how much your experience can impact another person!

Gluten-Free Does Not Mean Taste-Free

By Sarah Quain, Beyond Celiac Communications Assistant

Repeat after me: Gluten-free does NOT mean taste-free.

Throughout June, Beyond Celiac will highlight the enjoyment you can get from eating gluten-free. Each week, we’ll focus on a different area of tasty gluten-free cooking and eating to ensure you’re doing gluten-free in style. Check our website and social media for weekly posts, tip cards from our favorite bloggers and recipes from our sponsor, Boar’s Head.

The Spice of Life: Spices can make or break a dish. They can also be a hidden source of gluten.

New Twists on Old Favorites: Grandma’s famous home cooking goes gluten-free.

Condiments: Condiments can be cross-contact hotspots. Make sure those essential to a meal are safe and tasty.

Resource Spotlight: Gluten-Free Recipe Boxes

Beyond Celiac relies on the support of sponsors to bring you tasty gluten-free recipes year-round. From spices to soups, salads to sandwiches, our Recipe Boxes contain dozens of recipes that use products available at your local grocery store. Maybe you fancy a cure to that chocolate craving. Or could go for a mean sandwich right now. Or need to avoid several allergens. Whatever you’re taste, you’ll find a surprising supply of gluten-free goodness in these recipe boxes.

Ask Sophia: Getting through the Barbecue Season

Hello and welcome to my June blog! Barbecue season is here, so I am going to be giving you some helpful advice on eating gluten-free at any upcoming barbecues you are attending.

First of all, sometimes eating gluten-free at a barbecue can be awkward. If anyone asks you why you are eating something different, tell them you have celiac disease and it is mandatory for you to eat gluten-free or you will get very sick.

How do you stay safe at a fun-filled barbeque? First, ask the chef at the barbecue to put aluminum foil under your food while it’s on the grill. You see, the grill could have gluten on it from previous meals cooked on the same surface in the past. It is always important to be safe, so you may have to miss out on the grill lines in the burgers, but your food will still taste good and be gluten-free.

Second, as most barbecues involve hot dogs and hamburgers, bring gluten free buns. Bringing a pack of hamburger or hot dog buns will keep you safe and you will fit in and enjoy. Also, you should ask whether meat, fish, or other foods like vegetables, are marinated or seasoned with gluten-containing ingredients. Beware of soy sauce because it has gluten. My mom sometimes just brings a pack of hot dogs so that I will definitely have something to eat.

It is a good idea to ask for a separate bowl of chips or other food served in dishes or bowls where people use their gluten-contaminated hands to grab a serving. You are not being an inconvenience – you are keeping the chance of cross-contact low.

Lastly, you or your parent should ask for the ingredients in the hamburgers, hot dogs, and any other foods you want just to make sure they are gluten-free. People sometimes put breadcrumbs in hamburgers and while most hot dogs are gluten-free, you should check the packaging to make sure. To “top” my blog off, you can bring your own gluten-free barbecue sauce just in case there are ribs being served!

That’s all I have for my June blog! Thank you so much for reading and read my July blog and Hot Products blog next month!

Meet the Beyond Celiac Patient & Family Advisory Council

Meet Tara Keeven

What is your relationship to celiac disease?
I was diagnosed with celiac disease in 2015.

Can you tell us a little bit about your path to diagnosis?
Three months after giving birth to my second child I woke up one day feeling like a switch had been flipped; I was miserable, suffering from a long list of seemingly unrelated symptoms and many of them seemed to come and go with no real rhyme or reason. I visited a primary care doctor who suspected I had a thyroid issue. When she called to give me the “good news” that my thyroid was fine, I was adamant that something was not right. She was just as adamant that all of my symptoms were caused by anxiety and they would subside as soon as I relaxed. Fortunately, I had the good sense to seek a second opinion and sought out a specialist who immediately recognized that my symptoms resulted from celiac disease.

Can you talk about your life after diagnosis and your experiences living with celiac disease?
I found it pretty straight forward to recognize gluten on a label. The huge challenge for me, particularly with little kids, has been avoiding cross-contact. We have gotten to a point where our entire kitchen is gluten-free and our entire family is happier and more relaxed as a result.

In your opinion, what are the biggest flaws of the gluten-free diet?
Most of our favorite recipes have translated to gluten-free pretty well, with the one exception being baked goods. We are working on it, and enjoy taste testing in the meantime!

What are your hopes for the future and what changes do you wish to see in the celiac disease field?
My biggest hope would be to find a cure. Short of that, I would love to see more awareness about celiac disease among the general population. Eating in a restaurant can be such a stressful situation when you can’t tell if the staff understands avoiding gluten is a medical need and not a diet plan.

Meet Julie Kennedy

Why did you apply to the council?
Upon seeing the available position for Patient Advisory Council listed on the Beyond Celiac website, my mind started to spin. I thought about the possibilities of making a difference in someone else’s life by turning this struggle our family was experiencing into something good for someone else. The potential to help prevent some of the obstacles that happened to us from happening to others by speaking out and sharing our story was very motivating.

What is your relationship to celiac disease?
I was diagnosed with celiac disease in September of 2014 and after reading on the internet that celiac disease is genetic, I had my eight year old daughter tested as well. She tested positive as well.

Can you tell us a little bit about your path to diagnosis?

I naturally avoided pasta, pizza, and bread my entire life because I never liked the way I felt after eating those particular foods. After having my third child, I noticed those symptoms began to worsen, resulting in a visit to the doctor for a food allergy blood test. My doctor recommended getting tested for celiac disease and I ended up having “some of the highest numbers she has seen in a while.” After doing intensive research on the internet, I discovered celiac disease is genetic and thought I should test my three young children. My oldest daughter’s test came back with higher numbers than me. We were both diagnosed through endoscopy in September of 2014.

Can you talk about your life after diagnosis and your experiences living with celiac disease?
Since being diagnosed with celiac disease in September of 2014, both my life and my daughter’s life have improved significantly. I have seen a major improvement in my energy, awareness and exercise ability. Before going gluten-free, I suffered from anemia. I wasn’t truly aware of how terrible I felt until I experienced what it felt like to feel good. My daughter’s only symptom of celiac disease was her delayed growth. Before she was diagnosed, we were lucky if she grew two inches per year. The first year she was gluten-free, she grew 3.5 inches! That’s big for a third grader!

In your opinion, what are the biggest flaws of the gluten-free diet?

In my opinion, the biggest flaws of the gluten free diet include the lack of education and guidance upon diagnosis. At first, the gluten-free diet seems very overwhelming and confusing, but in reality, it is just a matter of getting back to our roots of natural and healthy eating. If each person diagnosed with celiac disease was given proper guidance and reassurance that this lifestyle change is possible, then I think the diagnosis would be much easier.

What are your hopes for the future and what changes do you wish to see in the celiac disease field?

After living gluten-free for 1.5 years and engrossing myself in the gluten-free lifestyle, there are many areas of growth that I see as a patient within the field of celiac disease. First of all, the follow-up care I have experienced is either non-existent or minimal, and it would be nice to see a celiac disease expert at least once a year to check our progress and address any new issues we have encountered. Like many other people living with celiac disease, we continue to experience the ups and downs of eating at a restaurant. It is a rare occasion when I feel completely confident in the restaurant’s knowledge and understanding of celiac disease. If and when we do decide to go out to eat, the meal always comes with a certain level of anxiety triggered by the thoughts of past experiences.

Coming Attractions

Join Mikayla Morell at the 3rd Annual Silly Acts for Celiac fundraising event, which will take place on June 4 at 2 p.m. Lamplighter Drive, Woodstown, NJ. Come on out for a fun day to see talented local acts perform their silly acts to raise money for celiac disease awareness! Silly Acts for Celiac resembles a talent show in which local performers showcase their talents to raise money for an amazing cause.

Donate or come out to this event and get more people diagnosed with celiac disease. Admission is only $7.00 by cash or check at the door. However, there will be additional items being sold and other activities you may want to participate in so come prepared. Register here today.

Canada’s breathtaking east coast beckons! The Canadian Celiac Association’s 2016 national conference will be held June 24-26, 2016 at the Holiday Inn in St. John's, Newfoundland and Labrador, on Canada’s eastern tip.

The keynote speaker is leading celiac disease researcher Dr. Daniel Leffler, Beyond Celiac Scientific/Medical Advisory Council Member and Director of Research at the Celiac Center at Beth Israel Deaconess Medical Center. The conference also will welcome numerous other fascinating presenters, including Erin Smith (the Gluten-Free Globetrotter), speaking about her many years of gluten-free travel and offering advice and useful pointers. Other pertinent topics to be addressed at the conference include celiac disease and osteoporosis, the pediatric and family doctor perspectives on celiac disease, a dietetic presentation and the lighter side with Patrick Ledwell, a celiac stand-up comedian who has appeared on Canada’s national public radio. Learn more.

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